After reporting my last set of dodgy results to the rheumatology hotline two days ago, I picked up a voicemail today telling me to ‘stop taking my methotrexate straight away, arrange another blood test for next week and then give them a call – leaving a message if I couldn’t get hold of anyone.’
That was it. There was no discussion about reducing my dosage again; no explanation about why my bloods were behaving erratically; no ‘we need to see you to talk about your options’; no reassuring me everything was in hand; no nothing. Hell, they didn’t even get the right meds. The last time I checked I was on azathioprine, not methotrexate. It’s rather disconcerting when the people in charge of your health can’t get even the basic facts right.
So here I am right now, a mixed bag of emotions ranging from frustration and disappointment to anger and relief. I know, I sound like the character line up for Inside Out. Or should that be:
The more observant among you may have noticed that Joy is missing…
First in the line-up is frustration: it took me a good four months to psych myself up to take the drug in the first place, not to mention the endless weeks after I started, when I felt like absolute shit. This all feels like it was for absolutely nothing. The disappointment is because it’s only very recently that I’d finally started to feel the benefits – and it was giving me a sense of hope.
Then there’s the anger because I can’t believe the prescribing, monitoring and stopping of a medication like this is handled in such a haphazard, ‘no one really gives a damn’ way. Come to think of it, I’m not even sure my care team would have noticed something was up if I hadn’t called to let them know. Slightly disconcerting.
And then finally there’s the relief, which admittedly seems to contradict the three emotions that go before. Only yesterday I read a blog that reminded me about the links between taking these chemo drugs and the increased risk of cancer further down the line. I had a mini meltdown (the 100th of the week) and all my worries that I had to block out just so I could swallow the first pill came flooding back. I started to second, third and fourth guess the decision I’d made. What if I was ‘borrowing time’ now to control my Lupus pain, but as a result, would increase the chances of that ‘time’ being snatched back in the future by a deadlier disease?
Of course, it’s an unproductive way to think as no one can predict what lies ahead and there’s such thing as a correct answer. I guess the question is: what price do you put on the quality of your present life and what risks are worth taking?
I feel quite wrung out by the whole experience, but I guess it was worth a shot. Being a person who believes that everything happens for a reason, I’ll just put it down to my body deciding this wasn’t the right treatment for me. How very rational and Zen that sounds, even to me!
So until someone with a medical degree tells me what happens next, it’s onwards and upwards, I guess.
If you want to recap on the whole azathioprine drama, it started from here: The Indecision Months, Day 1, Day 3, Day 7, Day 10, Day 20, Day 60 and Day 94.
One thought on “Day 96: well, that’s that then”
Oh wow! I am so sorry to hear about the negligence on your healthcare providers behalf. That is terrible. You can’t deliver a message of that magnitude to someone over a voicemail. I can’t believe that. But I do understand how you could feel frustrated, disappointed and angry. You have every right to be. I am also happy that you were able to find solace from my post. I wish you well and look forward to an update on what they decide for you. Keep your head up and stay positive!
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